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Breadbird 03-20-2011 10:24 PM

First Rheumatologist appointment: what should I expect/ask?
I am 26 but have suffered with chronic pain for 5-10 years but have never ask a doctor about it until two weeks ago. My doctor thinks I may have rheumatoid arthritis but said i was not a definite case. He referred me to a Rheumatologist which I go to see for the first time later today.
My GP already had some lab work done: hand x-rays and blood test to check for rheumatoid factor. Both test were "normal" which I'm assuming means there were no signs of RA on the x-rays and I don't have rheumatoid factor. I will clarify this with the rheumatologist.
I was not convinced that I have RA before the inconclusive lab results. I think that if I don't have RA I may have fibromyalgia (or both if I do have RA). But I know fibro is extremely difficult to diagnose and there are no lab teat that can be done for it.
Here are my symptoms and the reasons I'm not sure it is RA. I have had pain and stiffness in my finger joints and one toe at least since I was 16, possibly farther back than that. I also have constant pain in my shoulders that keeps me up at night, this has been going on for at least the past 6 years. I have mire minor and less constant pain in my lower back, hips, upper arms, and occasionally my legs, particularly the ankle area. I also have a lot of nerve issues especially in my lower arms and lower legs (wrist and ankle area) I'm pretty sure I have RLS but have never been diagnosed. I have occasional tingling and muscle spasms in various parts of my body. I also get optical migraines at least once a month and a lesser headache at least once a week.
Many of these things could be either fibro or RA. I also have some other non-pain related symptoms that have been connected with fibro but could just as well have no relation to my other symptoms. I also have scoliosis and carpel tunnel which I'm sure contribute to some of my pain and discomfort but not all of it.
I doubt RA because I have never had swelling, tenderness, or warmth in my joints and the only thing that has been debilitating is the carpel tunnel. But I do have an extensive family history of RA. I have been doing a lot of research on RA and fibro and have learned that fibro is often mistakenly diagnosed as
RA. I want to make sure I get the right diagnoses but want to know what I can do to help the doctor(s) figure it out.
I have some idea of the kinds of test a rheumatologist will do (or is suppose to do). But I do not know what questions I should ask.
Please help me.


Breadbird 03-20-2011 10:28 PM

Re: First Rheumatologist appointment: what should I expect/ask?
I also forgot to mentioned that I also have constant neck pain. The degree of all my pain varies from day to day and is on both sides of my body.
Also, I've tried OC pain meds (with the exception of naproxen as I have a bad reaction -maybe allergy- to it), soaking in warm/hot water, various pillows, as well as stretches and exercises and nothing has really helped. Bengay helps some of the shoulder pain on occasion but wears off after about an hour.
My GP gave me a prescription to help me sleep and alleviate some of the pain while in the meantime of waiting on a diagnosis but it hasn't helped either.

Please feel free to share your thoughts on the possibility of fibro or anything else you think it might be. My plea for help is not limited to what to ask at the rheum appointment.

p.S. The word "teat" was suppose to be "tests".

janiee08 03-21-2011 10:14 PM

Re: First Rheumatologist appointment: what should I expect/ask?
Hello and Welcome to the HealthBoards!! I just wanted to say that there is a lot of info on the arthritis board here on our boards, and a user that is very helpful and knowledgable there. Her name is jennybyc. There is also a Fibro board. But feel free to post here as well:) ...janiee

Breadbird 03-22-2011 08:12 AM

Re: First Rheumatologist appointment: what should I expect/ask?
Thanks for letting me know. My appointment went well. The rheumatologist was very thorough. He examined all my joints and ask a lot of questions. He spent extra time on my shoulders and neck, which i was thankful for since that is where the worst pain is. (My gen prac was more concerned about my finger joints even though that pain is a lot less than the shoulder psin).He was also open to any questions I had, though I didn't have very many as he did a great job explaining everything. His conclusion was that I don't have RA. I ask him about fibro and he said I don't have that either and explained why. He doesn't think I have a chronic pain condition, just chronic pain. He had x-rays done on my shoulders and neck and also had more labs done (quite a few, I had 8 finger length vials of blood drawn). The x-rays and labs were done to rule out any possible conditions or other things that could be causing my pain. I also liked that he explained that they consider medicine only a means to an end and prefer other methods of pain management. He gave me a muscle relaxer to take temporarily so I could sleep, which worked. Finally something did. He ask me if I was interested in physical therapy and recommended it. I have a PT appointment on Friday. I also have a follow up with the rheumatolgist in two weeks.
While I still don't exactly gave answers to why I have pain, I know for sure it's nit the two things I was worried about, and will hopefully have some other answers as to what it isn't very soon.
Since I don't have fibro or arthritis, it looks like the chronic pain board may be the most appropriate board for me after all.

Breadbird 05-23-2011 02:26 AM

Re: First Rheumatologist appointment: what should I expect/ask?
Just completed two months of physical therapy two weeks ago. They told me the pain was due to a muscle imbalance most likely caused by bad posture that I've always had. PT helped a lot. My posture and pain levels have improved greatly. I'm not 100% better but rather than constant moderate to severe pain, my pain is no longer constant, mostly mild now, and only severe in occasional flare ups. I've been sleeping much better and any insomnia I have now is usually not because of pain. I was given a pain management maintenance plan on my last day of physical therapy and shown some ways to prevent flare ups. I haven't been as good at following it as I'd like to be but it's going well.

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